Bengals Again

In September, Millie's Princess Foundation was invited to present their proposal to Brighton High School again. Brady asked me to come tell them what it meant to be part of Brighton High School last year.

I was only too grateful and humbled to get to talk to the officers. We were delighted when the Bengals chose Millie's Princess Foundation again. They have three brave new heroes to work with. They even invited us back to Brighton for their kickoff assembly.

We loved having Emma be their princess last year, and we are so excited for those amazing high school kids to do it again this year for Devin, Tyce, and Elaina.

Thank you, Brighton High.

One of the officers is also one of the Young Women I work with at church. She tells me that their fund raiser is her favorite part of high school.

I believe her. Those kids and those families are going to be changed in the next couple months. The world is a bright beautiful loving place, and people are good. Doing good builds so much.

Camp Hobe

I haven't posted an update in more than 3 months.

Things have happened. Emma visited clinic every 28 days to get her IV chemo. She had another back poke in the sedation room, and that went really well. Chemo into the CSF, a sample of that fluid for testing, and still no leukemic cells detected.

She finished her second year of music classes and did well at the performance. Here she is with her cousin who was in the first year. You can see how her hair is growing all over.

The Brighton High School softball team invited Emma to come co-captain a game. She got to call the coin toss and her official Brighton Jersey is number 45.

Daddy and Momma went to Moab for 4 days to run a race and to celebrate 11 years of being together. (we skipped #10 in favor of chemo.) While we were gone, Grandma Reeder had to take Emma to the E.R. with a fever. That was pretty dramatic and scary for Grandma.

This weekend Emma had another fever and another E.R. visit. She is doing well since.

One of the really cool things that happens because of cancer is that Emma and Lizzy and Tommy got to go to Camp Hobe. It is a week long camp every June. All the other kids are also cancer kids or cancer siblings.

Lizzy has been talking about camp Hobe for months, so excited. She got to stay overnight last year, all week long. This year Emma was old enough for week-long camp, too. They had their bags packed and were ready to go well in advance.

They swam every day, they rode the zip line and did a ropes course. They did crafts and sang campy camp songs. They stayed in cabins and played pranks. They were slathered in sunscreen, dipped in popsicles, and rolled in the dirt, I think.

Lizzy's favorite camp prank is to write the letter P on a bunch of yellow post it notes, and then put those post it notes all over the same-aged boy cabin, so the boys return to find P in their cabin. Super hilarious, I know.

We picked up the girls and both had friends with whom they need to set up play dates or pen pal arrangements. They can't wait until next summer to see their friends again.

Tommy went to one day of camp and did a lot of the same things. When I arrived to pick him up, he said he didn't want me there and that I should go away because he didn't want to go home. Not bad for a kid who wouldn't speak to anybody or make eye contact during drop-off.

Lizzy is planning to be a Counselor in Training when she is 16. I didn't know that was the timeframe; but Lizzy is totally aware. They get to attend until 3 years past treatment, so with luck we only get to attend 3 more summers. With luck, Caleb will not get the experience of week-long overnight Camp Hobe.

At this point all is promising. Emma has had no unusual or anomalous tests. She is handling her chemo well. Her ANC is kept well below the average person.

We are discovering a pattern. When her system is stressed: when she doesn't sleep in her own bed and eat normal food, or when she keeps going going going sunup til sundown... Under these circumstances that stress her body, she reacts with a fever.

Sometimes there is a virus or something causing the stress; but sometimes external influences bring on the fever. When we left her at Cousins and Grandma's house for 4 nights to go to Moab, she fevered. Camp Hobe... Fever. Last summer our family camp in Jackson featured a fever that prompted a mad dash to Salt Lake so she could be directly admitted.

It might be prudent to avoid all body stresses; but we do have another family camping trip scheduled this summer. This time, though, it is located about 45 minutes from Primary Childrens. I picked the venue to be closer. The pattern is emerging, though, and I would be unsurprised if we don't end up with a fever again.

Cancer is becoming the annoyance that Dr. Engle said it should be. Maintenance is significantly less stressful than the previous phases of treatment.

We are still juggling her daily meds. We changed doses last appointment, so now the med schedule looks like this:

Monday: 2.5 mg Septra morning and night, 1/2 tablet 6MP
Tuesday: 2.5 mg Septra morning and night, 1/2 tablet 6MP
Wednesday: 1/2 tablet 6MP
Thursday: 1 tablet 6MP
Friday: 1 tablet 6MP, 5 tablets of methotrexate
Saturday: 1 tablet 6MP
Sunday: 1 tablet 6MP

plus 2.5mg Dexamethasone morning and night for the first 5 days of each 28-day cycle.

Simple, right? The only bottles with the correct dosing written on them are the Septra and dex. All the others have previous dosing, so we have to keep it all straight.

She's doing pretty great, though. All the kids are. So there's the update after 3 months' silence.

Brighton High School

I am a month past the event. I should have been prompt.

January 23rd we went to the Brighton High School winter assembly. 

Millie's Princess Foundation posted this on Facebook:

THEY DID IT!!! Brighton High School met their goal and raised $30,000!!! These kids did the most amazing job. I have never seen more creative or enthusiastic fundraising!
The student body pledged different things should they reach their goal. Noses got waxed, a teacher was tased, the juniors got covered in syrup and feathers, one student sat in a bucket of ice water and salt, another ate a worm, another waxed his chest. Another shaved his head like an old man: bald on top with hair on the sides, another will wear a dog cone for three days and on and on and on. These kids were more than willing to put themselves through ultimate torture in order to encourage the students to participate and donate.

What was also clear was their love for Emma Reeder, Grady Lynch, Ethan Vanleuven and their families. Our hats are off to you Brighton High School. You were AMAZING. Thank you for all your hard work, for all your love, and all your support!

Josie ate a worm because the student body reached their goal.

This bold fellow had his head shaved old-man style. Shaved on top with a fringe around the sides.

The Studentbody President had his chest waxed right there in the assembly. This was Emma's favorite.

I think it was the sophomore class officers who were drizzled in a gallon of syrup each and then covered in feathers.

These officers got a spray tan.

This guy has been so cute from the beginning. Here he is fitted with the dog "cone of shame" that he would wear at school for an entire week.

This was from Amanda Flamm, the incredible supermama who runs Millie's Princess Foundation in memory of her daughter, Millie, who passed away after a second relapse of ALL the summer before Emma was diagnosed.

Such an awesome morning at Brighton High School! They worked so hard for Millie's Princess Foundation and were able to raise $30,000 that will go straight to helping 3 incredible families battling with childhood cancer. THANK YOU Brighton! It was an honor to work with you and an honor to get to know these three families. I am grateful to now call them all my friends.

Carrie Lynch said:

We are so honored to know these people and to call them our friends. Thank you Brighton High School and thank you Millie's Princess Foundation. What a humbling, awesome and emotional experience.

 







And this was Jennifer Van Leuven's comment:

We were blessed to be a part of Brighton High School's fund raiser for the year. They teamed with Millie's Princess Foundation and raised $30,000! Truly amazing! We spent the morning at the assembly watching the student body officers do fun things like eats worms, sit in ice water, wear the "cone of shame" for 3 days, and get syruped and feathered because they reached their goal smile emoticon We were honored to share the morning with the Merinda Reeder and Carrie Butterfield Lynch families! Good, good people 

Brady Flamm does most of the speaking and a whole lot of the work for Millie's. He said to us one day that Millie's Princess Foundation is what gets them out of bed many mornings. He has a full-time job besides the foundation; but he and his family have unending energy and enthusiasm for this.

Emma and Brady

I am honored to have shared a bench with these families. They are amazing people and we are glad to have the chance to become friends.

I am incredibly grateful to Millie's Princess Foundation and to the Brighton High School students and community that combined forces to raise so much for us.

$10,000 is a lot of money, and somebody might be interested in what we do with it, so I'll tell you. Our family's out of pocket maximum is $10,000.00. As of February 19th, the insurance company has processed our 2015 claims to date and we have met our responsibility. The insurance is now picking up the rest of our in-network covered medical expenses. When we get the full pile of bills from January, it will total $10,000.

I can't say enough how scary and how daunting it would be to find 10K right now. I can't even begin to say how big a deal it is for us to know that we can pay our bills this year. It is huge knowing that we shouldn't see more bills, provided Emma doesn't need a transfusion.

Grady Lynch is such a darling boy.

We collect statements, still, for sure. In our world, though, $10K is more than the replacement cost of everything that lives in our driveway. It is a year of keeping Emma alive and fighting for her future.

Thanks from the bottom of our hearts to Brighton High School and Millie's Princess Foundation.

November Fun, Fingernail Wierdness, and Thanksgiving

Most of November has passed and no new posts. No news is pretty good news in cancer. I have seen a lot of other cancer kids' blogs where they drop off once they get into maintenance.

Brighton High School had a freezing 5-K followed by a Fall Festival fundraiser. The kids loved hanging out with Grady's family and Millie's younger brother. 

They also partnered with our local Chick-Fil-a to split some of the profits on the dinner sales one fine Thursday night, so we went to see our Brighton Buddies then, too.

 

And one more picture of November activities. HopeKids does a movie once a month, and we got to see Big Hero 6 with them at Jordan Commons. The kids loved that.

We had a clinic appointment starting the next 84-day cycle. Those come with Lumbar Punctures. We chose to have her LP in the sedation room again. Dr. Katelyn did the LP, since she is amazing at it. Emma was calling her the Back Poke Queen. The notes suggested a dosage range for the sedation drugs, and I recalled for them that the dose they used was ample and possibly more than needed to get the job done.

Emma stayed asleep for 90 minutes. Sedation is supposed to slow a kid down for about 15 minutes, and they should lie down for a full 30 after an LP to let the methotrexate mix well with the CSF and to reduce risks of headaches.

They adjusted the notes for Emma to use much less of the drugs for her next sedation. I do believe it's genetic. My father and I also respond very thoroughly to any anesthetics. A little goes a very long way for our respective weight classes.

We asked Dr. Doug and Dr. Elizabeth about Emma's fingernails.

They both seemed perplexed. It looks like the old nail died and there is a new nail growing underneath it. I initially figured it was a chemo reaction of some kind, but when they both were unfamiliar with it, I started to worry just a bit over what would make a kid's nails do this.

Another cancer mama saw them, said she'd heard of it, and suggested reaching out for an answer. The cancer mama community has indeed seen it. One mama said her doctor responded to her own kiddo's similar problem with an explanation that the nail bed is a complex matrix and the chemo must have disrupted it. Within a couple hours, five different mamas said their kids had experienced something like it.

It isn't necessarily common, and doesn't seem to be a side effect of any one particular drug, so it wouldn't go on the medication information sheet. I heard of it after a stem cell transplant and during different phases of treatment. So there you have it... the nail bed is a complex matrix.

Cancer is not a great thing at all; but it comes with some blessings. I love the people we have gotten to know through this. On Tuesday, we had a play date with one of Emma's friends so that I could talk with my cancer mama friend. We'll do it again.

Earlier this month I went to an overnight retreat in Heber. 30ish mamas got together at a cabin. Several restaurants catered meals for us. The mama who organized it managed to get quite a lot donated so that it would be affordable. It was so incredibly therapeutic to listen to each other, to relate about this unwelcome horror that we have all had to live with. 

Those are some strong women. We have different interests, different backgrounds, different educations and ages and socioeconomic statuses. The shared experience, though, leads to a level of trust and camaraderie. I am so grateful to know them. They are strong. Their stories and their children's stories are compelling. 

Tomorrow is Thanksgiving. We have so much to be grateful for. I am so grateful for people whose life work, career, and everyday focus is to help my Emma.

I am grateful for pediatric oncologists, for researchers, for nurses, medical techs, and all the medical personnel that fight cancer. I am grateful for Primary Children's hospital. I am grateful for the dozen-plus organizations that we know that help bring joy to sick kids. HopeKids, Make-a-Wish, Millie's Pringess Foundation, NEGU joy jars, ACCO, Anything Can Be, the folks who make capes and gather socks and legos, the blanket makers and pillowcase makers. I am so grateful that technology allows for a free and efficient support group on Facebook - I need that group so much.

I am grateful for good neighbors. I am grateful for a close family. I am grateful for my anonymous cash donors. I am grateful for the friendship and generosity of quiet helpers that impact us so much and don't want to be thanked openly. (you know who you are.) I am grateful for CapitalOne360's contest last year, without which we would be in a very different place with the stress and the budget.

I am grateful for the treatments we do have, and grateful that we still have Emma.

I am mindful of those that are missing their angel children at this time of year. I think it must be awful every day to have lost a child; but this time of year must ache a bit extra.

There are so many things to be grateful for, even in the cancer world.

Emma became a Bengal

I am hoping this link works.

Today, Emma went to Brighton High School, where the Principal gave her a school shirt and made her a Bengal.

Brighton is working with Millie's Princess Foundation to help three cancer families,  and we were invited to be one of the three. This video was our introduction to the student body.

We are so grateful, humbled, and honored.

Emma and mom got to meet Grady and his dad, as well as Millie's family. The students and teachers at Brighton were so kind to us.

EDIT:
I wanted to add this video, while we're looking at Youtube. Zions Bank did this for Millie's Princess Foundation.